The following excerpts are from another Dying With Dignity Canada ATIP (from January 1, 2021 to August 14, 2023) I did to Employment and Social Development Canada (ESDC). I have italicized what appears to be HC's comments in this internal email, since their red comments do not appear in the ATIP.
Internal email in ESDC.
Dying with Dignity was one of the stakeholders that was consulted and submitted comments on the MAID regulatory amendments. Most of their submission was fairly technical - i.e. commenting on the wording of specific provisions, however, I've extracted some of the general points that they raised. I’ve made a few comments in red as to our position re the comments - the ones in which I haven't included comments go beyond the scope of the regulations.
As noted in our suggestions to Health Canada in May, DWDC believes MAID reports would benefit from the inclusion of real-world context behind the data, including patients' background information (excluding their identity), their condition, and additional details concerning their decision to seek MAID; including such real- world information in Health Canada's reports could also lead to enhanced public understanding of MAID, including the various instances in which people seek to access it. It should be noted that in a January 2021 poll commissioned by DWDC and conducted by Ipsos, it was found that 37% of Canadians do not know that MAID is legal in Canada or believe that it is illegal. While HC's agree that this detail is important, we believe that it is best captured through third-party research and not by practitioners.
• In provinces which employ more of centrally coordinated MAID system (e.g., Alberta) the collection of additional patient information is made much easier when an intake person is responsible for that function. It should be noted that there is concern however that this could lead to a disparity in data collection across the country. HC agrees that the care coordination model is an efficient way to collect data and can reduce practitioner reporting burden.
• The federal government should recognize the significant new administrative burden that will be placed on MAID clinicians if they are required to ask all of the proposed questions Based on stakeholder feedback, HC is looking at ways to reduce the number of question in order to reduce administration burden on practitioners. However, it should be recognized that there will be increased reporting burden due to Bill C7 requirements to collect data on race, Indigenous identity and disability and the enhanced procedural requirements for persons whose death is not reasonably foreseeable.
• The federal government should work with the provinces to provide reasonable administrative support through targeted funding.
• The federal government should work with the provinces on the development of a model for the fair and equitable remuneration to Nurse Practitioners who provide MAID services
• The information sought should be tied to an individual's health card so it can be readily accessed via the province by Health Canada
• Remove all questions that can be answered by patients and are not eligibility/procedural safeguard questions and place them in a separate paper and electronic survey on Health Canada letterhead and available for printing by clinicians; it must be made very clear in this document that patients are contributing to the overall understanding of MAID in Canada and the identification of any systemic barriers to MAID Provinces and Territories already integrate questions that go beyond eligibility/procedural safeguards into their own MAID reporting forms/systems and for P/Ts reporting directly to Health Canada this is incorporated into the reporting portal. Doing this as a separate survey would only increase reporting burden.
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Here we have the Minister meeting with DWDC. Other Ministers have also met with DWDC. I wonder if these ministers have met with anyone opposed to euthanasia, or if they only meet with Dying With Dignity?
MEMORANDUM TO THE MINISTER OF EMPLOYMENT, WORKFORCE DEVELOPMENT AND DISABILITY INCLUSION
Meeting with Dying with Dignity on December 7, 2021
For your Meeting
Summary
• You are meeting with the organization Dying with Dignity Canada (DWDC) regarding medical assistance in dying (MAID) on Tuesday December 7 at 2:00 p.m. DWDC representatives Helen Long and former Senator James Cowan will attend the meeting.
...Issues of interest to DWDC that are the focus of AMAD and the Expert Panel. Specifically, DWDC opposes the exclusion of mental illness and advance requests from MAID; they are in favor of reducing procedural barriers to MAID...
...Organizations such as DWDC are opposed to the exclusion of mental illness from MAID...
...Before the Act was passed, the House of Commons rejected a Senate amendment that would have permitted advance requests for MAID prior to being diagnosed with a grievous and irremediable medical condition (i.e., dementia). DWDC, among other organizations, was opposed to the Government’s decision to reject this amendment...
Clearly, Dying with Dignity opposes any exclusions to MAID.
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From an email internal to ESDC:
I attended a meeting today with Min (Kristina and Taras) with Dying with Dignity (former Senator Jim Cowan and Helen L). Focus of the discussion was how to bridge the gap between the perspectives of the disability community with that of dying with dignity. Specifically the organization was seeking advice on how to engage disability organizations.
Dying with dignity emphasized that as a principle their organization supports the idea that persons with disabilities should have access to the programs and services that would allow them to live.
But they see this as a separate issue from MAID and expressed concern that disability organizations were using MAID as a way to leverage additional action on disability supports. The emphasized that from their experience and work the perspective of advocacy organizations and individuals with disabilities was not aligned. That according to their studies and surveys persons with disabilities are just as likely to be supportive of MAID as other Canadians. They added that the principle of autonomy and choice were important ones for persons with disabilities to be treated equally as other Canadians.
What about the persons with disabilities who are not supportive of MAID? There are lots of them. And once again, we have the DWDC doing their own studies.
They stated that many persons with disabilities do not want to make their perspectives known publicly and this is hindering their ability to bring these issues to light. They also speculated whether there needed to be more engagement and discussion (education) with the disability community about the process for MAID and the current safeguards in place.
Min emphasized that education was not necessarily something they saw as an issue, but identified some common ground on issues such as data collection, the development of safeguards. DWD indicated that there were no known cases of abuse of MAID in Canada and didn’t think it would be necessary to add additional safeguards noting these could end up being barriers to MAID . They also were not sure that making individuals aware of disability supports available to them would be practical and were concerned that given the differences in supports available across the country this may lead to a barrier for individuals to access MAID.
Known cases of MAID abuse. Barriers to MAID are a problem? Disability supports are not practical?
Min raised that while there may not be cases of abuse known, that the pandemic has highlighted some of the biases that exist in the health care system and that often physicians look at disability more from a medical rather than social perspective and that there are biases embedded in that including disableism and ableism. Training was therefore an important aspect of the MAID system to ensure there was greater awareness of disability issues and the experiences of persons with disabilities.
Min said that there would be opportunities to engage more when the parliamentary review restarted and that they were also watching closely the work of the expert panel on mental health. It was agreed that a dialogue with the disability community may not be productive but finding areas of common ground would be.
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Helen Long is worried about the negative news reports on MAID. As we all should be. Very worried.
From: Helen Long, Dying With Dignity Canada Date: Tue, 24 May 2022 at 11:11
Subject: Clearing up misconceptions
Hi
Stories have been circulating in the media about people in Canada being forced to access MAID, and that those who are not able to access supports that they need to live are opting to have MAID instead. We have published some facts on our website to clear up common misconceptions, like these ones, around Bill C-7 and expanded eligibility criteria for medical assistance in dying.
Recent polling has shown that 82% of Canadians support the removal of the "reasonably foreseeable" death requirement from MAID legislation and that 86% continue to support the Carter v. Canada decision. These and other stats can be found in a newly released Ipsos poll, conducted on behalf of Dying With Dignity Canada.
Note above that maybe polling should be done from a third party and not by DWDC.
We were pleased to see the House of Commons unanimously support a motion regarding a Canada Disability Benefit. The federal government must increase investments into supports for people with disabilities and fully support our most vulnerable populations, so they have every opportunity to thrive.
Thanks to the generous contributions of 1,247 supporters, we surpassed our fundraising goal this spring, with a total of $111,663 raised (and counting!).This support has afforded our team the resources needed to increase our education, patient navigation, and support work now and into the future.
This is a common bragging point in DWDC's emails--how wonderful it is to get the thousands and thousands of dollars in donations.
The last thing I want to share with you today is that the Final Report of the Expert Panel on MAID and Mental Illness has been released. This report will help to inform the Committee as they finalize their own Interim Report on MAID and Mental Illness, which is expected to be completed by June 23. We thank the members of the Panel for their work in producing recommendations on practice standards, vulnerabilities, implementation, and more.
Sincerely,
Helen
CEO
