Take action to support advance requests

In November, I wrote about the death of Audrey Parker, who had advocated strenuously for changes to Canada’s medical assistance in dying (MAID) legislation that would have allowed her to die on her own terms.

The expert panel I referred to in that piece submitted its report to the federal government on December 12th, and now it is time for those of us who support advance requests to take action.

But first, here is a glimpse at what the report says.

The question

The Expert Panel on Medical Assistance in Dying was asked to consider the following question:

“What is the available evidence on, and how does it inform our understanding of, medical assistance in dying (MAID) in the case of mature minors, advance requests and where mental illness is the sole underlying medical condition, given the clinical, legal, cultural, ethical and historical context in Canada?”

The Panel, consisting of 43 people with expertise in a variety of areas including law, medicine, nursing, bioethics, social sciences and health sciences, established three working groups (WGs), each of which examined one of the three situations posed in the question.

The answer

The three final reports examine, “with the sensitivity required of the subject,” the available evidence. They also explore the societal, clinical, legal and practical implications and issues associated with both permitting and prohibiting MAID in the three topic areas. They do not make recommendations, but are intended to assist those who will make decisions as well as to inform the ongoing dialogue about MAID across the country.

MAID for mature minors

Presently, people under the age of 18 cannot access MAID. The WG looked at the issue of MAID for mature minors (MMs); who it defined not by chronological age but by their capacity for decision-making. One of the key concerns explored was the need for heightened protection for MMs. As the WG noted, there are two aspects to this: protection from exploitation and protection from exclusion.

This WG also explored the issue of how to determine whether MMs are capable of providing informed consent. The report includes an interesting discussion about relationships between MMs and their families and communities, noting that for many MMs, healthcare preferences are

“relationally intertwined with those of their parents [which] which does not mean that parents are necessarily veering their children towards a particular treatment option.”

As with each WG’s report, this one includes a number of factors for consideration as well as a discussion about pros and cons of allowing or prohibiting MAID for MMs. It also sets out potential safeguards, were MAID for MMs to be implemented. This report concludes with this comment:

“[P]art of protecting potentially vulnerable patients is to ensure that they are listened to. Thus, it has been argued that, rather than denying healthcare choices to groups frequently labelled as vulnerable, society must provide the accommodations to ensure that everyone is protected not only from exploitation, but also from being ignored and excluded.”

Advance requests for MAID

This WG begins its report by clearly differentiating advance requests (ARs) from advance directives (ADs). ADs, which fall under provincial and territorial jurisdiction, allow a person to give the power to someone else to make health care decisions if they are not able to do so themselves; however, ADs do not allow that individual to make a decision for MAID. Only an AR can authorize that, and ARs have no legal authority in Canada at this time. To allow ARs for MAID requires an amendment to the Criminal Code.

The report notes that people want to have control over their end of life and to avoid intolerable suffering, both of which would support the use of ARs for MAID. As it states:

“For people who wish to receive MAID, the knowledge that they could lose decision-making capacity and thus become ineligible for MAID is a source of fear.”

Given that third parties would be making the decision to use MAID if ARs were permitted, there are a number of issues and uncertainties that would need to be addressed, which are set out very helpfully in a table provided in the report.

The challenges for healthcare providers as well as third parties are explored, even as the report also notes that allowing ARs for MAID “would recognize the values of respecting patient autonomy and self-determination in Canadian society.” The primary risk identified by the WG is that a person could receive MAID against their wishes. Potential safeguards are discussed in a table that identifies those at the systemic, legal, clinic and individual levels.

MAID MD-SUMC

Medical assistance in dying where a mental disorder is the sole underlying medical condition (MAID MD-SUMC) was the third topic tackled by the Expert Panel. This WG could not come to agreement on a number of issues, which is an indication of the complexity of this particular topic and the vulnerability of this group of people.

Among the many issues explored by this WG were the capacity of such individuals to make informed choices/provide informed consent, determining whether a mental disorder is a grievous and irremediable condition and the relationship between MAID MD-SUMC and suicide.

All three WGs reviewed international evidence, most of which comes from the Netherlands, Belgium and Luxembourg, but this WG did so in particular detail, setting out, in a very helpful table, the stipulations in each of those jurisdictions for what is called Psychiatric Euthanasia/Assisted Suicide.

In its discussion about potential implications of prohibiting or expanding MAID MD-SUMC, the WG touches on both over-inclusion (people receiving MAID where it is not appropriate) and under-inclusion (people unnecessarily excluded from receiving MAID). The report lists a number of potential safeguards should MAID MD-SUMC be made more broadly available, including involvement of family/important third parties, a multi-disciplinary evaluation, training for healthcare professionals and mandatory reporting and review of cases.

What’s our role?

If you are interested in understanding this issue in greater detail, find some time to read the Expert Panel’s Report or even the Summary. While it does not make recommendations, its conclusions seem to support moving towards expanding the situations in which MAID could be an option.

If you support the expansion of MAID to become available to mature minors and people where a mental disorder is the sole underlying medical condition and if you think people should be allowed to make advance requests for MAID, sign the Dying with Dignity petition. DWD is hoping to get 15,000 signatures on this petition (when I signed it, there were just over 11,000), which you can personalize if you wish. Take a few more minutes to email your MP to encourage them to speak up about the importance of implementing these ideas now. With an election in the near future, there is no time to waste.

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