What We Heard Report
A Public Consultation on Medical Assistance in Dying (MAID)
March 2020
You are currently reading a simplified, accessible version of this report. Please visit this webpage to consult the original version.
Results from the Online Survey
In total, there were 300,140 responses to the online survey. Members of the public could do the survey directly online. They could also download a form to fill out. They could then send the completed survey by email or through regular mail. The survey was open for two weeks.
The online survey was monitored. This was to make sure that real people were filling it out and not ‘bots.’ There were some responses that were rejected. For example, one set of automated responses was rejected. This was about 1,000 responses.
There were also cases where the same set of responses was submitted more than once. They were sent by a person from four times up to 63 times. These surveys were not included in the total. Any response that was received after the deadline was not included.
The results are presented below. They follow the questions that were in the survey.
Demographics
Section A of the survey asked people where they live and what language they speak (what are called demographics). The sections below show the demographics of the people who filled out the survey.
Province or territory
The table below shows the number of people in each province or territory that responded to the survey. It also shows the percentage of people from each province or territory, compared to all people in Canada who answered the survey.
Ontario had the most responses at about 35% of everyone who responded. British Columbia had the second most responses at about 23%. And Alberta had the third most responses at about 12%.
| 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
The table below shows what type of place people who filled out the survey lived in. People were asked if they lived in a city (urban) or in a rural location. About 70% of the people lived in a city. About 27% said they lived in a rural area.
| 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
The table below shows the language used by the people who filled out the survey. The language used was based on the version of the survey that was completed. Most of the people responded in English. About 92% responded in English and 8% responded in French.
There were also 153 surveys submitted in Chinese. An organization translated the original survey and made paper copies for a group of Chinese speakers. After these were reviewed and checked for accuracy of the translation, they were included.
There were also 26 responses received in sign language. This includes American Sign Language (ASL) and la langue des signes québécoise (LSQ).
| 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% |
The table below shows the language used in the responses from people in Quebec. Most of the responses were in French at about 81%. About 19% of responses were in English.
| 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 of the survey gave some background information about the MAID eligibility conditions. It was there to inform people who filled out the survey. This information is on the Government of Canada’s website.
Safeguards to protect against misuse or abuse of MAID
Section C of the survey was about safeguards. The first question asked people about the current safeguards. It asked if these would be enough to stop abuse or misuse of MAID if the conditions to be eligible are opened up to people who are not expected to die.
The table below shows the responses to the first question. About 73% of people said that the current safeguards are enough. About 25% did not think they were enough.
| 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% |
The second question in Section C provided a list of possible safeguards. Some were suggested changes to safeguards that are already in place in Canada. Some are not currently in place in Canada. These safeguards are similar to the safeguards that other countries have around MAID.
The question was about using these safeguards for people who were not expected to die but who want to access MAID. In the question, the people all meet the rest of the conditions that allow them to use MAID. The question asked people to rate how important the safeguards in the list would be for people who are not expected to die. The ratings use a scale from ‘not important at all’ to ‘very important.’
The table below shows the list of safeguards and how they were rated in the survey.
| Safeguard | Not important at all | Slightly important | Important | Fairly important | Very important | No opinion | No Response |
|---|---|---|---|---|---|---|---|
| A. A different amount of time between the written request for MAID and having MAID. The current time is 10 days to reflect. | 20.9% | 13.6% | 16.3% | 16.3% | 34.4% | 4.1% | 1.4% |
| B. MAID should only be available if all other treatments have been tried and did not work. Both the MAID practitioner and the patient have to agree on this. | 16.1% | 15.2% | 17.5% | 8.9% | 38.5% | 2.1% | 1.7% |
| C. A psychologist or psychiatrist has to say that the person is able to consent to receiving MAID. | 17.5% | 16.0% | 17.3% | 8.9% | 37.2% | 1.7% | 1.4% |
| D. Making sure the person asking for MAID is aware of all the ways that might relieve their suffering. This includes health and social support services. It can include counselling, disability support, or palliative care. | 3.6% | 6.0% | 19.4% | 7.2% | 61.9% | 0.6% | 1.3% |
| E. An expert in the person’s medical condition would have to say the person is eligible. This is in addition to the two medical assessments already required. | 27.8% | 16.7% | 13.7% | 8.9% | 29.7% | 1.8% | 1.4% |
| F. Past MAID cases would be reviewed by a committee. The committee would see if the eligibility conditions were met and the safeguards followed. | 18.9% | 15.9% | 19.8% | 9.2% | 32.0% | 2.8% | 1.5% |
| G. Special training and tools to help MAID practitioners to see if there was any worry about a person who is asking for MAID. These could be mental health issues or outside pressures to take MAID. | 3.5% | 7.3% | 20.3% | 10.4% | 55.9% | 1.1% | 1.4% |
| H. MAID practitioners would have to offer to discuss the patient’s situation with family or loved ones. This would be done with the patient’s consent. | 12.0% | 12.1% | 20.2% | 12.3% | 40.1% | 1.9% | 1.5% |
The third question in Section C was a place where people could fill in their own comments. The question asked if there were any other comments about possible safeguards for people who are eligible for MAID but who are not expected to die.
The table below shows the number of people who gave comments. Almost 32% of the people who answered the survey gave comments for this question.
| Number of Responses | Percentage of Total | |
|---|---|---|
| Comments added | 95,473 | 31.8% |
| No Response | 204,667 | 68.2% |
| Total | 300,140 | 100% |
In this report, the section Summary of Comments has the contents of the responses. They are discussed by theme. This section is coming later in the document.
Advance requests for MAID
Section D of the survey was about what some people call “advance requests”. In the question, people were given situations and asked if they agree or not.
The situation for question 1 was as follows.
Imagine that a person makes a request for MAID. They are found to meet the eligibility conditions. They are waiting for the procedure. But something happens to the person a few days before they are scheduled for MAID. They lose their ability to understand their situation and make decisions about their health care. They cannot provide the final consent needed just before the procedure. In your opinion, should a doctor or nurse practitioner be allowed to provide MAID to a person in this situation?
The table below shows the responses to this question. About 78% of people said ‘yes’ to this question.
| 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% |
The situation for question 2 was as follows.
Imagine that a person is diagnosed with an illness that will affect their mind over time. It will take away their ability to understand their situation and make decisions about their health care. Alzheimer’s disease is an example. The person prepares a document that says they might want to receive MAID at some point in the future. In the future they might be sick and suffering a lot. At that time they might not have the ability to ask for MAID. They say in the document that they want MAID at that time even if they can’t ask for it. In your opinion, should a doctor or nurse practitioner be allowed to provide MAID to this person in this situation if they no longer have the ability to give consent for it?
The table below shows the responses to this question. About 79% of people said ‘yes’ to this question.
| 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% |
The third question in Section D was another place where people could fill in their own comments about these situations.
The table below shows the number of people who gave comments. Almost 32% of those who submitted the survey gave comments for this question.
| Number of Responses | Percentage of Total | |
|---|---|---|
| Comments added | 95,608 | 31.9% |
| No Response | 204,532 | 68.1% |
| Total | 300,140 | 100% |
In this report, the section Summary of Comments has the contents of the responses. They are discussed by theme. This section is coming later in the document.
Additional comments
Section E of the survey provided a final place for people to give any additional comments. The table below shows the number of people who gave final comments. About 21% of people left additional comments. These responses are discussed in the next section.
| Number of Responses | Percentage of Total | |
|---|---|---|
| Response | 63,492 | 21.2% |
| No Response | 236,648 | 78.8% |
| Total | 300,140 | 100% |
Summary of comments
Overall, there were more than 254,000 comments. These were made over 136,144 responses. A comment had to have more than five letters to be counted.
There were so many comments that they had to be sorted by a computer. They were sorted by the theme or topic of the comment. This was done by searching for certain key words and phrases. Then researchers read the comments and analysed them.
The researchers found eight themes. The themes are described below.
- Safeguards
- Advance requests for MAID
- The right to die
- Concerns about mental illness and mature minors
- Opposition to MAID
- Personal experiences
- The role of the family in MAID
- Specific concerns about MAID
There is a summary of the comments for each theme in the next section.
Theme 1 – Safeguards
Most comments about this theme did not support more assessments by doctors and nurse practitioners when a person asks for MAID. There were many concerns that this would increase delays and people would suffer more. There were concerns that people who lived in rural or remote areas would have even more delays.
There were also concerns that assessments would not be available in rural or remote areas, so people wanting MAID would have to travel to a city to be assessed. This would cost money and some people would be unable to pay. It would also be hard for people to travel when they are already suffering.
Some people suggested that we need accessible and quick consultations with medical practitioners. There were suggestions to use video conferencing. There were also suggestions to use computers and mobile devices to access health care services in rural and remote areas. There were also suggestions to have medical practitioners travel to the rural and remote areas. Some people suggested that the expert assessment should be required to be done in the 10-day period to reflect or the same kind of short period.
There were different views on the length of the period to reflect. Some felt that 10 days was long enough. Others wanted to see it be made shorter or removed in certain situations. This would be when a person is going to die very soon. It could also be done when a person is in distress with no chance they will improve. They wanted this done to reduce the amount of suffering.
But other people wanted to see the period to reflect made longer. They felt this should be done for people who request MAID but who are not expected to die. It could also be done for people who are not getting worse very quickly.
Theme 2 – MAID through advance requests
There was a clear majority of people that supported advance requests for MAID as an option. The two questions in Section D that were about advance requests show the support of about 78% and 79% of the people who responded.
Some suggested safeguards for advance requests. There could be regular reviews and renewals of the request. There could be regular follow up by medical practitioners. This would show if there are new questions, concerns or decisions to be made. This could confirm whether the person still wants to make an advance request.
Some felt that patients should not have to give consent for MAID just before they get it. They felt this was especially true for people with diseases that affect the brain or people who have conditions that will not get better. Many people pointed out that the reason a person makes an advance request is because their health is getting worse and they want to avoid suffering at a time when they can no longer request MAID.
In the comments, people stressed the right to withdraw consent at any time for those who can give consent just before they get MAID. Some people pointed out that if a person is no longer able to say yes, then they are also no longer able to change their mind. They think the request that was made when they were of sound mind should stand.
There were some concerns that people may choose to get MAID earlier than they want. They do this because they are afraid they might lose their ability to consent at the time of the procedure. Some people said that an advance request is like a will, a Do Not Resuscitate (DNR) order or agreeing to organ donation. They felt it was not right to disregard a request made earlier. They think it will mean that patients will have to suffer more.
Some people suggested a process could be required for these cases. This could include the person naming someone who can make the decision for them if they lose their ability to consent.
In the comments, there were some personal stories told by family members. They had loved ones with illnesses like dementia, Alzheimer’s, ALS (Lou Gehrig’s disease), Huntington’s, and Parkinson’s diseases. There were some concerns about the role of family members. This included whether or not family members could ask for MAID for their loved one. It also included whether or not they should be allowed to change what the patient asked for.
Many felt that it was important for people to have the option to make an advance request for MAID. They also felt that advance requests should be followed. They felt that if the person went through all the steps for their advance request that they should get it even if they lose the ability to consent at the last minute. They felt that the person should have MAID unless they show fear or they resist just before the procedure.
Theme 3 – The right to die
Most of the responses were focused on the person’s right to choose when to die, no matter what the situation. Many people referred to how we treat our pets. It was said that we give them more compassion than our fellow human beings. There were calls for less ‘red tape.’ People also said the process should be as simple and easy to get as possible. Many argued that it is important to honour the wishes of the patient and grant them dignity in dying.
Theme 4 – Concerns about expanding the eligibility for MAID
The comments under this theme included worries about letting more people have MAID. This would be for those who suffer from mental illness and mature minors.
Most of the comments were not in favour of expanding MAID to people who suffer from mental illness. They had concerns that people who had an illness such as depression may feel that MAID is their only option. But there may be effective treatments that could help them to feel better.
Instead of letting more people have MAID, many felt there should be a different focus. They felt that more should be done to help people. This included more options and tools for people with mental health issues. It also included more resources for people with physical disabilities.
Some people said there was a danger that people with different kinds of disabilities could be influenced or pushed by other people. They may also feel like they are a burden to their family and friends. They may also feel like a burden to the health care system. Some people suggested that there should be different, specific conditions for these groups to have MAID.
But others felt that people with mental illness should be eligible for MAID in certain situations. This would include where the mental illness is really affecting the person and where treatment does not work. Some noted that mental health conditions can cause as much suffering and pain as physical conditions. Mental health conditions may not respond to treatment. Sometimes this can make people attempt suicide in dangerous ways rather than ending their life in a safe way.
Most people did not support MAID being expanded to minors. They said minors are still growing and changing. They could make a decision that cannot be reversed and die before their time. Other people agree with minors being able to have MAID. This would be where the young person is expected to die. The proper safeguards would have to be in place.
Theme 5 – Opposition to MAID
This theme was about being against MAID in general.
Some of the surveys were ‘form responses.’ These were surveys that had the exact same response for each question. They were submitted individually. There were thousands of surveys like these. They all said the same thing. They were opposed to the idea of MAID in general.
In these form responses, comments included the following: people who are sick must be encouraged to embrace life and not seek out suicide; advance requests would make it impossible for a person to change their mind; and MAID is just another word for murder.
Other form responses made it clear that governments should be putting more money into palliative care instead of offering MAID. Some were concerned that there is not enough supervision of the MAID law.
Some responses said that the end-of-life condition to receive MAID protects vulnerable people with disabilities and mental illness. Others felt that this condition limits a person’s access to MAID and may trap them in unbearable suffering.
There were also concerns that MAID would be cheaper than treating people with chronic illnesses and disabilities.
Some said that they were disappointed with the consultation questions. They said it forced them to agree with MAID in order to argue about giving more people the ability to have it.
There were other responses, than the “form responses” that were opposed to MAID.
The focus of the comments on this theme was on the importance of human life and the value it has to offer. Many said that life has a value all of its own. They said that MAID violates the sacred nature of life. One person wrote that “life is a gift of God, and God is the giver and taker of life.” Many other people agreed with that person.
In addition, many said that MAID is a way for the government to reduce its financial costs. They said this would happen by government using MAID to speed up the deaths of elderly, disabled or sick people who are seen as costing society a lot of money.
Many people also thought MAID was a ‘slippery slope.’ They said it opened the door to government helping people die when that would be good for the government in some way.
Along the same lines, many comments made note of the practitioners who could be asked to provide MAID. They said it was immoral for the government to force health care professionals to perform MAID. It would put them in a situation where they are forced to end someone’s life.
Overall, the responses about this theme stress that life is precious. They say that it is not the government or medical professionals who should control when life ends.
Some said that there was no place for religious objections to MAID in our society. These religious objections should not be pushed on those who do not have the same beliefs.
Theme 6 – Personal experiences
This theme included personal stories from thousands of Canadians who shared their first-hand experiences with MAID.
In many of the stories, the person’s loved ones did not have access to MAID. In some cases, this was because their illness happened before the MAID laws. In other cases, it was because their loved one was unable to give consent. Many made comments about the poor quality of life for those who are suffering or who have a lot of pain for a long time.
Some commented on how they had witnessed MAID. They said people were surrounded by friends and family. They said it gave the person receiving MAID compassion and dignity.
There were also many comments about people who stop their pain medication so they can keep the ability to give consent at the last minute. Most of these comments said that the MAID law needs to let people have MAID even if they can’t give consent at the last minute.
Theme 7 – The role of the family, caregivers and loved ones
Comments on this theme were about the role of family members, caregivers and loved ones. In Part D, many people left comments about the role of those who are close to the patient or involved in their care and support. For example, many people commented that family members must be involved in decisions about MAID.
Another view was that the person’s decision must be respected. This is regardless of what the family members might want or believe. There were many suggestions of ways to make MAID easier for people who are not able to consent. This included having legally binding documents. It also included having video recording requests. There was a suggestion to have a panel of experts for this type of MAID request. It was also suggested that people could be allowed to choose a person they trust to make decisions about MAID for them.
Theme 8 – Specific concerns about MAID
The comments showed a clear demand for more money for different kinds of services. This was for better long-term, palliative, and mental health care. People also felt that better support would reduce the need for MAID. This included better social support, counselling, and disability support. This would improve the quality of life for people.
There were also many comments that showed concern for the mental health of people who have to provide MAID. They said that health care professionals need to have their cultural, religious, and personal values respected. Some people commented that forcing doctors and nurses to take part in MAID violates their rights. Other people commented that publicly funded hospitals should not refuse to provide the services the public needs.
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