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.

Perspectives from the Roundtables

Along with the online survey, there were also roundtable meetings held across the country. The meetings took place between January 13 and February 3, 2020.

The roundtable meetings were hosted by three ministers. The Minister of Justice, the Minister of Health, and the Minister of Employment, Workforce Development and Disability Inclusion hosted 10 in-person roundtable meetings.

The meetings were held in the following cities across the country.

These meetings allowed the three ministers to hear from over 125 experts and stakeholders on key issues. The experts and stakeholders included people from the following groups.

In addition, the ministers hosted a separate roundtable for Indigenous practitioners and community leaders. The meeting was focused on getting specific feedback from this group.

People in all the roundtables had a wide range of views on all the MAID issues. There is a summary of those views in the next section.

Eligibility conditions

A clear MAID law

In the roundtable meetings, some people said the main terms of the MAID law must be clear. This is very important with respect to criminal law. There are serious consequences if a person breaks the law.

Some people noted that there were differences in the way certain terms and words are understood. These terms are in the eligibility conditions. This includes the following terms.

Some noted that if the term ‘reasonably foreseeable natural death’ was removed it could make other parts of the law more important. For example, the condition that the person must be in an ‘advanced state of irreversible decline’ in their capacity would be more important.

Some stakeholders said that the rest of the eligibility conditions would be clear enough to determine if a person was eligible for MAID. They said it would not be necessary to pass more laws on eligibility conditions.

Many noted that the law should not be too strict or inflexible. This would allow each MAID request to be assessed on a case-by-case basis.

Access to MAID and having enough practitioners to provide MAID

In the roundtable meetings, some people said it was important that everybody had access to MAID. Certain people warned that if the law was not clear, it could reduce the number of practitioners who are willing to provide MAID. If doctors and nurse practitioners felt that parts of the MAID law were not morally right, this could also reduce the number of those who are willing to provide MAID.

Some people thought that the Truchon decision might lead to more MAID requests. This could depend on how the law was changed in response to the decision.

People noted that the amount of people asking for MAID could have an impact on access. They also noted that the amount of MAID practitioners could have an impact on access as well. These things could make it harder for some people to actually get MAID. All levels of government would need to deal with this.

Scope of eligibility

There were discussions about letting people who are not expected to die have MAID. Some people asked questions about how this would change things.

Most people at the roundtables had concerns about people with mental illness having MAID. They said it would be very hard to tell if a person was able to make health care decisions if they have a mental illness. They said it is hard to know if a mental illness will get better. They said it would be a challenge to put a safe system in place for people with mental illness. This is especially true because of the eligibility condition that an illness needs to be ‘incurable.’ This term is not used in the mental health field. It is also hard to know enough about the person’s suffering in the case of a mental illness.

Even though they had these concerns, some people noted that stopping people with mental illness from having access to MAID would be discrimination. Some felt it was too early to let people with only a mental illness use MAID. They also felt that evaluating MAID request from these patients would take a lot of resources. These resources may not be available. Doing this may also take away resources from patients who want to get treatment for their mental illness.

Other people had concerns about providing MAID to people who had recently had a traumatic injury or became disabled. They said there needs to be a period of time when people are not allowed to apply for MAID after their injury. This would give the person time to adjust to their new situation.

Some people who represented disability rights organizations said they were disappointed that the Government of Canada decided not to appeal the Truchon decision. They thought the MAID law was already careful and balanced. It allows for people who are expected to die to access it but prevents anyone else from using it. They said the role of the “reasonably foreseeable death” condition is to protect against the harm to society that might happen if disability was a reason to end life. They felt that removing this condition would make disability or illness a reason to end someone’s life, which is not the case for any other personal feature.

Some disability organizations said that a law that compares disability with the eligibility to die would be subject to a Charter challenge. They said this could violate section 15 of the Canadian Charter of Rights and Freedoms. This section has to do with equality rights. They noted that this had not been considered by the courts in any real way.

Indigenous individuals and practitioners noted unique challenges for MAID in their communities. This is a result of a history of trauma for many generations of Indigenous people. Many spoke about the harmful experiences that Indigenous individuals have had with the health care system.

This includes having procedures against their will. There are also ongoing challenges in getting culturally safe care. There is limited access to the health care system and discrimination in the way health care is provided. There were concerns about expanding the MAID system outside of the end of life. Some were worried that Indigenous patients may choose MAID because they don’t have access to adequate health care services. This includes palliative care programs. It also includes options to help people who have a lot of pain and who have mental health issues. Some also worried that Indigenous patients could choose MAID because of outside pressures like a lack of housing.

It was noted a number of times that access to MAID in general is more limited in remote and northern communities. Some questioned how a broader and more complex MAID regime could be put into place in these communities.

Safeguards

Existing safeguards

The people who took part in the roundtable discussions strongly supported getting rid of two safeguards. The first is the need for two independent people to witness the signature on the written request. The second is the 10-day period to reflect. They said that these two safeguards can cause unnecessary suffering or keep people from accessing MAID.

Some practitioners noted that in most cases the patient has already thought about MAID for a long time before they ask for it. It is also likely that they spoke to their family and their health care team.

Others noted that having two witnesses does not give any more protection. They said people who cannot find two independent witnesses will simply get strangers to witness their request.

Some noted that it can be hard for some people to find two independent witnesses. This is especially true for people who live in long-term care facilities.

Possible new safeguards

Many people at the roundtable meetings noted that a number of the possible new safeguards are already in place in standard medical practice. This includes having additional consultations. This also includes telling the patient about all of the ways available to relieve their suffering. It includes involving their family members in the discussions.

People said that directives on MAID need to be developed. They said the delivery of MAID needs to be more consistent across Canada. This should not get in the way of access to MAID.

There were mixed views on the idea of a safeguard that required an agreement between the practitioner and patient that all options have been tried. They said this was not in line with a patient-centered approach to health care. They also said that requiring treatment might impact a person’s autonomy to make their own health care decisions. But there were others who thought this was a necessary safeguard. They thought it would protect people who are at risk, especially people with mental illness.

A number of people at the roundtable meetings noted that they did not believe a psychiatric assessment would be necessary for all MAID requests. They also felt it could decrease access in some areas. This is especially true in rural, remote, and Indigenous communities. Access to mental health professionals is already very limited in these areas.

Many people suggested that a two-track system of safeguards be introduced. This would depend on the person’s situation, such as whether they are expected to die or not, and whether they have a physical illness or a mental illness.

Some disability rights organizations felt like this system would be a good way to protect vulnerable people, and would not place more burdens on people who are expected to die. But some people thought that making extra safeguards for certain medical conditions might not be good. They thought this might add shame or stigma to certain medical conditions. But this would depend on how this system was approached if it were to be used.

Some Indigenous people at the roundtable said that the best safeguards for Indigenous people would be more services. They said that appropriate medical care needs to be provided. And that health services and mental health care need to be available. 

Many said that cultural safety was a key safeguard needed for Indigenous people in relation to MAID. They said it would be important to train health care providers to deliver culturally safe care.

Some Indigenous people at the roundtable highlighted the differences in how Indigenous people view death and dying. They stated that there is a need for guidance from Elders and spiritual leaders. This would help to make sure MAID is done in a way that is culturally safe and appropriate. Some stakeholders said it was difficult to talk about MAID and advance requests in the North. Many patients speak a different language. Certain words and terms in the MAID law do not exist in their language. This makes communication about MAID difficult.

Waiver of final consent and advance requests

A waiver of final consent means that the need to give consent for MAID immediately before it is provided, also called “final consent”, does not apply and does not have to be given.

Many people at the roundtable meetings were comfortable with the idea of allowing advance requests for certain persons. This would apply to those who have been approved for MAID but are at risk of losing their capacity before MAID is provided. Some argued that these situations result in less uncertainty for the practitioner as to what the patient wants. They said this could avoid situations where a person suffers because they have reduced their pain medication in order to keep their capacity. Some noted that Quebec’s Expert Group on Incapacity and Medial Aid in Dying supports advance requests for MAID in these situations.

Many people said that advance requests are more complex when they are done after the diagnosis of a condition that limits the person’s capacity, but before the person is found eligible for MAID. They thought this situation needed more reflection, consultation and study. This was similar to the findings in the report by the expert panel on advance requests by the Council of Canadian Academies. 

Several people who represented disability rights organizations had strong concerns about removing the need for final consent by allowing advance consent for MAID. They also had concerns with any form of advance request. They recommended that these issues be addressed during the Parliamentary Review process.

They said there was not enough time to review this topic. They said there were many concerns about allowing ‘proxy consent’ or substitute decision making for MAID, which means that the decision is made by someone else. They had concerns that substitute decision making might be allowed in broader situations in the future if it was first allowed in the case of a person who is approved for MAID.

There were others outside the disability rights area that were also concerned about the idea of a substitute decision maker for MAID. They noted the challenges for people at risk who do not have close family or friends that could act as a substitute decision maker in their best interests.

Some people noted that the general idea of advance requests is not in keeping with the objective of MAID to ensure a person’s autonomy until the end of their life. They said people often have trouble saying how they will react in the future in certain situations. For example, a person with dementia may not be unhappy like they thought they would be as a result of their illness.  A patient’s anxiety may decrease as their disease progresses. Sometimes, an effective treatment may become possible for a patient.

Some doctors and nurse practitioners stressed that they would hesitate to provide MAID to persons who have lost the ability to consent before the procedure, even if the person has already been approved. They argued that an advance consent should only be valid for thirty days. They said they would be uncomfortable providing MAID based on consent given more than 30 days ago.

Practitioners indicated wanting to think about the ethical issues related to advance requests. They said it would be hard to provide MAID to a person who has an advance request but who now seems content or even happy. The same was felt about someone who is resisting the MAID procedure through words or gestures.

Miscellaneous

Access to alternative treatments, supports and services

Many people at the roundtables stressed the need for improved health care and social system supports. These are needed for palliative and disability services. They would help to protect people by preventing them to choose MAID because there are not enough supports. The same applies to mental health and suicide prevention services. Some disability groups were concerned that some people may choose MAID because they cannot access the supports to relieve their suffering.

Some people warned that any changes to the MAID law should not put people at an advantage for services because they requested MAID. It should not disadvantage people in other situations who do not want MAID, but who want to have access to the same services in order to receive help and have a better quality of life.

It was noted by some people that individuals make decisions based on their real world situation. They should not be denied access to MAID because of a lack of resources for other services.

Oversight

The comments relate to how the MAID system in Canada is monitored.

Some people at the roundtables said that the Canadian oversight system could be improved. Some noted that the federal monitoring system does not perform a true oversight function. They noted that the process should be more transparent and understandable. They referred to practices in the Netherlands. In that country the work of the MAID review committee is available to the public.

A number of practitioners thought that the review of past cases is important. They said high-level information that combines many cases is not detailed enough. It is not much help to medical professionals. It is also not much help to groups that make rules around health care.

Some people gave examples of good models to follow. One example was Quebec’s Commission sur les soins de fin de vie. Another example was Alberta’s MAID review committee.