Webinar summary: C-7’s impact and what comes next
News & Updates | March 22, 2022 | Dying With Dignity Canada
On Wednesday March 16, in recognition of the anniversary of Bill C-7, we gathered to hear what this significant legal change has meant for Canadians, and what the future of MAID in Canada could look like.
Gary Anandasangaree, Parliamentary Secretary to the Minister of Justice and Attorney General of Canada. He is an internationally recognized human rights lawyer and community activist who has advocated tirelessly for education and justice. In honour of his devotion to community service and local advocacy, he has received both the Queen Elizabeth II Golden Jubilee Medal and Queen Elizabeth II Diamond Jubilee Medal.
Dr. Jonathan Reggler, a family physician in Courtenay, B.C., on Vancouver Island, MAID provider, board member, and co-chair of DWDC’s Clinicians Advisory Council. He studied medicine at the University of Cambridge in the United Kingdom. His practice is deliberately geared toward treating seniors, so he also provides a lot of palliative care.
Helen Long, CEO of Dying With Dignity Canada. Helen has a long track record of informed engagement and empowering leadership in the not-for-profit, health and wellness sector with a strong focus on advocacy, public relations and organizational excellence.
How has Bill C-7 impacted your work as a MAID provider? And what are you hearing from your patients about the new law?
Dr. Reggler: The waiver of final consent has been a welcome change. It allows patients to make the most of the time they have left, because they are not worried about losing capacity before their scheduled MAID provision. It was very painful to see patients end their life early because of this concern; for many it feels like an insurance policy that their MAID provision will happen even if they lose capacity.
The removal of the clause that a person’s death must be ‘reasonably foreseeable’ has allowed MAID providers to serve suffering patients who need their help. It has also increased the number of requests for MAID assessments, without an increase in MAID providers to address them. It varies by region, but some areas have wait lists for assessments for these reasons.
Helen Long: The number of Independent Witnesses needed on a request for MAID has been reduced from two to one and can be signed by a personal support or healthcare worker. This has made the process less onerous as some patients want privacy, live remotely, or they have a limited circle of people they can call on for this part of the process. Also, virtual witnessing became legal in some jurisdictions. We saw a decline in requests for witnessing because of the above-mentioned.
Can you share with us the status of the parliamentary review? When can Canadians expect to see the Special Joint Committee reconstituted?
Mr. Anandasangaree: The expert Panel on MAID and Mental Illness has been working on their report which will include recommendations for the application of MAID for those whose sole condition is a mental illness. The recommendations will inform the minister who will put safeguards and policies in place by March 2023, when MAID for mental illness will be law. We expect to see this report next month in April of 2022.
The Parliamentary Review of MAID was paused by the 2021 election. We expect the Special Joint Committee addressing the issues in the parliamentary review to be reconstituted this spring.
We encourage Canadians to engage in this process and offer their lived experience and opinions. This issue has a long history of advocacy and has been informed by what the community tells us is important. You can reach out to your Member of Parliament.
Note: You can download Dying With Dignity Canada’s Advocacy Toolkit to prepare you for a meeting with your MP, and you can send a letter to your MP expressing your interest in the issues being addressed in the parliamentary review.
There is widespread support for advance requests. What is DWDC hearing about advance requests from people across Canada?
Helen Long: 83% of Canadians support an advance request. It’s the number one thing we hear about from our supporters and followers. In terms of the parliamentary review, it is DWDC’s top priority. Canadians who have experienced a loved one suffering through an illness, or at end-of-life, feel strongly about having the option to exercise an advance request for an assisted-death. MAID is not a choice that everyone will want to make, but everyone should have the option to choose it if they want to.
We are also starting to recognize some of the complexities that advance requests will present. For example, how and when will the request be made, is there an enduring relationship between the patient and the clinician, who will determine that suffering is intolerable? There are details to be worked out about how advance requests can be applied practically.
Can you tell us how the waiver of final consent differs from an advance request? In what scenarios are patients using a waiver of final consent?
Dr. Reggler: A waiver of final consent is available to patients in Track 1 who have been approved for MAID and have a date set for their provision. If the patient loses capacity to consent to MAID on the day of their provision, it ensures and permits that their MAID provision continues.
One issue with the waiver is that it can be a difficult concept to get across to a patient, particularly if their condition has progressed and there is confusion or delusion. Capacity is task specific, a person with dementia can make a decision about whether they want their eggs poached or fried, but not able to decide about medical assistance in dying. It is one of the reasons we encourage people who are considering MAID to start the process early.
An advance request, on the other hand, would be a request for MAID by someone who has not yet applied or assessed. The person will be recording that in certain circumstances, should their suffering become intolerable, they would wish to have a medically assisted death.
While we advocate for this change in the law, we do need to consider the complexities that will come with advance requests. My view as a physician is that this is about suffering, and not about labels or specific conditions. The person should be able to express that they are informed about suffering, and that’s what they give consent to MAID for. It should be a balance of suffering and circumstances.
Can you tell us a bit about the types of race and indigenous identity data currently being collected? Will there be future changes and what will they look like?
Mr. Anandasangaree: We are aware that our data collection at the federal level is currently limited, but it is essential that we expand the information that we collect, not just with MAID but all systems, to ensure equitable access to programs. More recent MAID data will be more granular and useful for changes and development.
Can you share a bit of what your process looks like when assessing Track 2 patients? How do these situations differ from Track 1?
Dr. Reggler: Track 1 is for patients whose death is reasonably foreseeable, and Track 2 is for patients whose death is not reasonably foreseeable. The biggest difference is the information gathering that is required for Track 2 patients. Generally, they have been suffering for years, they have tried many treatments, surgeries or medications, and all this information must be gathered and reviewed in order to make a clear assessment and exercise due diligence. Often an expert in the patient’s condition will need to be consulted or brought in, and all of this takes time. There was an estimate that the passage of Bill C-7 would increase MAID requests by 15%, but with Track 2 the workload is much more than that.
Track 2 patients are not dying, but they are choosing to apply for a medically assisted death. They do not want to be dead, what they want is for the suffering to end. Clinicians need to understand this and gather all the information they can.
Track 1 patients are generally more straightforward, as the patient’s death is foreseeable with a more recent diagnosis.
Dr. Reggler added some context around dementia
Dr. Reggler: A patient with dementia can be assessed for MAID early on in their diagnosis when they still have capacity. Because of the age most people are when they develop dementia, they do have a naturally foreseeable death – and often other conditions or frailties.
Dementia is a predictable neurodegenerative disease, where decline will occur. It is a serious and incurable illness. Intolerable suffering is for the patient to decide. There needs to be an advanced stage of an irreversible decline in capability, clinicians will judge this when they believe capacity is about to be lost. They will see the patient regularly until this time.
With the introduction of MAID for those whose condition is psychiatric in nature; will the federal government be increasing resources when it comes to other supports for those with mental health concerns?
Mr. Anandasangaree: This will become legal in March 2024 and should be informed by the report from the Expert Panel on MAID and Mental Illness.
The government appointed a Minister for Mental Health and Addictions, Dr. Carolyn Bennett. This is a recognition that more focused resources are needed for mental health supports. A funding envelope of ~$5 million was distributed to the provinces. A suicide hotline was created and the upcoming budget will include more funding for mental health supports.
As a clinician, how are you feeling about MAID being extended to those with a mental illness?
Dr. Reggler: It will be very difficult, but it is necessary. There is a small number of people who have unrelenting, serious, incurable mental health conditions that has led to them suffering intolerably for years, sometimes decades. These people should be allowed the dignity of an assisted death, just as somebody who is suffering from something like cancer.
Contrary to the disgraceful propaganda that many anti-MAID groups might try to tout, a person with temporary depression or someone who has not tried numerous medications or treatments will not be eligible for MAID in March 2024. A clinician’s job is to find ways to help relieve a person’s suffering through multiple therapies or drugs before ever resorting to an assisted death. I will be saddened when I am asked to provide a medically assisted death to someone with a mental illness, mostly because nothing that I or my colleagues have been able to do, has relieved the intolerable suffering. But having done a proper assessment, if I come to the conclusion that the patient is eligible and meets the criteria that they are in an advanced state of declining capability, I will go ahead.
Helen Long: We look forward to the report form the Expert Panel on MAID and Mental Illness. We acknowledge that it’s critical that additional supports for people with mental illness should always be available, as well as reasonable access.
We need to recognize that the number of individuals with a mental illness who will be eligible for MAID will be extremely small. In the Netherlands, for example, where MAID for mental illness has been legal for over 20 years, the percentage of assisted deaths is 1% of all MAID procedures.
We’re hearing from clinicians who are already overwhelmed with Track 2 patients. We need to be prepared for more MAID requests in March 2023 and we encourage the government to increase funding for MAID resources and training.
During the C-7 hearings concerns were raised by the disability community about the new law devaluing the lives of those with disabilities. In contrast DWDC hears from individuals with disabilities who feel that additional safeguards and talk of protecting the vulnerable are “insulting” and “condescending.”
Mr. Anandasangaree: C-14 was an initial starting place after the Carter decision, and we have seen MAID evolve in Canada. We need to find a balance between safeguards and access. The Joint Committee report will help inform decisions around the concerns of the disability community.
Budget 2021 committed to improving the lives of Canadians living with disabilities by designing a new disability benefit. Can you provide an update on that process?
Mr. Anandasangaree: There is~$376M dedicated to supports over 5 years that will impact 45,000 through the disability tax credit from Budget 2021. There will be a further $11.9M in funding to inform and design a new and more accessible disability benefit program. We are going to ensure that the right supports are available to those who have disabilities so they can live life to their fullest potential.
What gaps are there when it comes to MAID eligibility and access?
Dr. Reggler: The most obvious gap in eligibility is mature minors. We are talking about ‘mature’ minors, youth who can make an informed decision about their suffering and treatment. This has been established in every other area of healthcare; MAID should not be excluded.
The prohibition of MAID in some publicly funded healthcare facilities, usually on the grounds of religion. This leads to forced transfers, where the patient may need to be moved for their assessment and most certainly will be moved for their MAID provision. This leads to unnecessary worsening of intolerable suffering.
Dying With Dignity Canada is currently running a campaign in British Columbia regarding healthcare facilities that receive taxpayer funding but prohibit MAID onsite. If you live in B.C., please tell your MLA that this practice must stop.