Timothy Holland summarizes the recently released Special Joint Parliamentary report on medical assistance in dying (MAiD) as it applies to advance requests for MAiD.
On February 15, the Special Joint Committee on Medical Assistance in Dying (MAiD) released their long-anticipated report, “Medical Assistance in Dying in Canada: Choices for Canadians.” The report provides a review on five issues:
- The state of palliative care in Canada,
- Protections for Canadians with disabilities,
- MAiD when mental disorders are the sole-underlying medical condition,
- MAiD for mature minors, and
- Advance requests for MAiD
This commentary will focus on the Advance Requests section of the report.
Currently in Canada, advance requests for MAiD are only permitted in two very specific situations:
1) Waiver of Final Consent: After March 2021, through Bill C-7, Canadians with a reasonably foreseeable natural death approved for MAiD could agree to a written “waiver of final consent,” which would remove the requirement of providing consent immediately prior to their MAiD procedure. With such an agreement, if the patient loses capacity prior to the scheduled date for MAiD, MAiD may still be provided so long as “the person does not demonstrate, by words, sounds or gestures, refusal to have the substance administered or resistance to its administration.”
2) Advance Consent: Bill C-7 also clarified that a MAiD provider can provide MAiD if self-administration of MAiD fails, provided that a written agreement to do so is in place. In such a scenario, a person who orally self-administered MAiD medication becomes unresponsive but the medication fails to result in their death. If this happens, the MAiD provider could administer an intravenous medication to ensure the patient dies as desired.
Apart from these two specific scenarios, patients cannot make an advance request for MAiD. However, as noted in the report, there is public support for opening legislation regarding advance requests, and the primary scenario where advance requests are desired is in the context of dementia.
As it stands, a patient with a dementia-causing disease, such as Alzheimer’s, can receive MAiD, however, they must have capacity immediately prior to receiving MAiD (unless they happen to fall into the two specific scenarios described above). Due to a fear of losing capacity, patients may choose to receive MAiD at the earlier stages of their dementia, if eligible, but risk losing years of quality life. More likely, however, patients with dementia may lose capacity before being able to request or consent to MAiD.
While the report notes the potential risks with advance requests, it does not characterize these risks as “deal breakers.” Instead, the risks are generally characterized as concerns to keep in mind when implementing advance requests, such as:
- The need for support for people with dementia,
- Difficulties in interpreting an advance request,
- Logistical concerns with administering MAiD for a conscious person who lacks capacity,
- The need for safeguards to protect and empower vulnerable persons.
To help deal with these concerns, the committee makes note of the following possible safeguards:
- An advance request should be made after a diagnosis is present,
- The advance request ought to document objective criteria for intolerable suffering (such as being bedridden, or not being able to recognize family members),
- The patient should ensure their wishes are known to family and healthcare providers,
- The advance request ought to be periodically reaffirmed,
- There should be a central, national repository where such advance requests can be registered,
- Patients should have access to healthcare supports to make a well-informed decision,
It is worth noting that the report does not officially recommend these safeguards. Instead, the report recommends changes to the Criminal Code so that advance requests are legal with an understanding that the provinces and territories will be the ones developing standards and safeguards. In the end we are left with only three official recommendations:
That the Government of Canada amend the Criminal Code to allow for advance requests following a diagnosis of a serious and incurable medical condition, disease, or disorder leading to incapacity.
That the Government of Canada work with provinces and territories, regulatory authorities, provincial and territorial law societies and stakeholders to adopt the necessary safeguards for advance requests.
That the Government of Canada work with the provinces and territories and regulatory authorities to develop a framework for interprovincial recognition of advance requests.
It’s worth noting that the only safeguard recommended in the report is that the advance request must be made after a diagnosis of a “serious and incurable condition, disease, or disorder”. That’s simply the first component of “grievous and irremediable condition”, which leaves open the possibility for advance requests being used for cases where death is not reasonably foreseeable, where a mental disorder is the sole underlying condition, and in situations where the patient may lack capacity but remain conscious.
Of course, there’s a big difference between recommendations and legislation, but if these recommendations are followed, Canada would become one of the most liberal countries in the world as regards advance requests for MAiD. Very few countries permit advance requests in any form, and even fewer permit advance requests in conscious patients. Only the Netherlands has sufficient experience with advance requests to provide much guidance on the practice. As a result, Canada will be exploring this new direction for MAiD with far less information than we’ve had with previous areas of expansion to MAiD legislation. While I am wholeheartedly supportive of advance requests, the development of ethical legislation, practice standards and clinical guidelines is going to be an incredibly difficult task that will be intermingled with controversy and potentially volatile debate. Here we go again.
Timothy Holland is Department Head and Assistant Professor in the Department of Bioethics at Dalhousie University, a physician provider for MAiD, and up until 2022 was Chair of Ethics for the Canadian Medical Association.