2nd Session, 43rd Parliament
Volume 152, Issue 24
Monday, February 8, 2021
The Honourable Pierrette Ringuette, Speaker pro tempore
Bill to Amend—Third Reading—Debate
Hon. Mobina S. B. Jaffer: Honourable senators, I rise at third reading debate. I first want to thank the members of the Standing Senate Committee on Legal and Constitutional Affairs; the clerk, Mark Palmer; the analysts, Julian Walker and Michaela Keenan-Pelletier; and steering committee members Senator Campbell, Senator Dalphond and Senator Batters.
Thank you so much for your work.
I rise today to speak about Bill C-7 and the expansion it proposes to medical assistance in dying to include people who are suffering from illnesses that are not treatable but their end of life is not foreseeable.
MAID affects the most vulnerable, our most sick, but MAID is not a treatment option nor should it be treated as such. It is for people like Janet Hopkins who, in her letter to us, said:
All humans and animals have a primal urge to survive. What then brings a person to prefer death? Constant pain eats at your soul. It destroys. We start to question. Do I have to be doped just to exist? What is considered an acceptable amount of suffering? How much is enough to satisfy those who can’t or don’t want to understand? There is a limit to one’s endurance. It’s not that we want to die, it is that the pain has taken away the will to live. I am not the same person I was all my life. I am losing myself.
Honourable senators, Ms. Hopkins had so much more to say. Some of it is so sensitive that I cannot share it publicly with you, but committee members have read it. That is the kind of suffering we are speaking about.
MAID is intended as a well-thought-out, meaningful choice for people who are suffering, and in 2016 it was incorporated into our legal system to allow for such autonomy.
As we discuss expanding MAID, there are many aspects of the bill that I am sure you have heard about. I know that most aspects of the bill have already been shared with you, but there is one aspect of the bill that we have not heard about, and that is the importance of collecting and analyzing data.
Honourable senators, let me be clear: Without data, we are blind. We are making decisions without complete data. How are legislators supposed to take informed decisions and ensure that correct, meaningful policies are put in place without any data? How are we to solve our problems and prevent them from festering without any appropriate information?
Let me give you an example. Without the data collection and analysis related to women’s issues in Canada — like the wage gap or violence against women, among other issues — would we have been able to carve the effective legislation that our great country now has? Would we have been able to advance the rights and equality of women? I assure you, we would not. Information is crucial for legislators and policy-makers.
Honourable senators, last November, at the time of the pre-study, I asked Minister Lametti if a gender-based analysis was carried out for this bill. He stated, “A gender analysis was done, and I can share a summary of it with the committee.” I followed up, asking if a race-based analysis was carried out. The minister responded, “My understanding . . . is that it was part of the gender-based analysis, and we can share that as well.”
Minister Lametti is the first minister ever to have shared gender-based analysis plus with the committee, and I thank him for that. He lived up to his promise, and in January the committee received the gender-based analysis plus. While I truly commend Minister Lametti for the gender-based analysis done for Bill C-7, I was saddened that the only sentence referring to race was an indirect quote under the demographics section, which reads, “The federal monitoring regime does not collect information about individuals’ income, education level, ethnicity and gender diversity.”
In our February hearings this year, as we studied the bill, I asked the minister why this was the case. The minister said:
The serious problem that we have across government, which has been illustrated in a number of different contexts, including this one, as well as our response to COVID-19, is the lack of disaggregated data. The challenge across government is to get better data, to have disaggregated data that allows us to answer the kinds of questions that you’re asking and to do the kinds of race-based analyses that . . .
— we were asking for.
Honourable senators, I know you know this, but 20% of our population is made up of people of colour. Almost a quarter of Canada’s population is racialized, yet the federal agency is not collecting data to help policy-makers take informed decisions about their future. We are going in blind on this bill to fight a battle for the lives of millions of people all over Canada.
During the committee hearings, I proceeded to ask witnesses from the Criminal Law Policy Section in the Department of Justice about race-based data collection, and they had almost the same answer, except they encouraged me to follow up with Health Canada about my concerns.
I went on to ask Ms. Abby Hoffman, Senior Executive Advisor to the Deputy Minister, Health Canada. I told her that I was very disheartened to see there was virtually nothing considered on race and the gender-based analysis plus document that I had received. My question to her was the following:
Given these regulatory powers belong to the health ministry, to your knowledge, is this disaggregated race-based data collected by the federal government?
Ms. Hoffman said:
. . . as far as the federal monitoring regime is concerned, we are not collecting race-based data or other information with respect to ethnicity.
We will be looking very clearly at how we can include information about ethnicity, not only in the monitoring regime itself but in our more general consideration of our societal and sociodemographic issues that influence both access to health care and access to MAID and consideration of eligibility for MAID.
I proceeded to ask Ms. Hoffman: “Is there any collection at all of data?” Ms. Hoffman replied:
If you’re talking about race-based data related to MAID specifically or even access to health services more generally at the federal level of a comprehensive nature, I would say the answer to that is no.
The answer is no, honourable senators. We do not collect data about a quarter of our population; that is millions of Canadians. Ms. Hoffman, however, said that through linked data sets at Statistics Canada, this information could be collected. But she added:
It’s possible, but there are issues of timing. We pride ourselves on the fact that we’re producing this MAID data and monitoring report as soon as we can after the period in question. If we waited to pursue linked data with Statistics Canada, another year or more would elapse before we could actually shed light on the issues you’re talking about.
Honourable senators, we learned from our witnesses. Dr. Timothy Holland, who is a MAID physician provider and assessor, said:
A MAID assessment is no trifle affair. In order to perform a MAID assessment, we must have full knowledge of the patient’s comprehensive medical status. We must perform a robust capacity assessment. We must ensure the patient fully understands all options available to them, so that we can be sure the patient is making a truly informed decision. And we must also understand who that patient is as a human being and understand the values that have guided their life. Only then can we truly assess if they meet the criteria for MAID and feel confident that this is truly the patient’s own decision, free of coercion.
Honourable senators, without data collection and analysis, we only have the anecdotal evidence we receive from the many racialized witnesses with lived experiences. I believe the time is right in our country to collect data affecting all Canadians. We need to do much better.
Honourable senators, we are studying this bill, and I wanted to bring to your attention the issue of non-data collection for almost a quarter of our population. Senators, I raise this issue with you. I could have raised many other issues. All I have done since December and January has been to live, eat, breathe and sleep Bill C-7. I raised this issue because I did not think anybody else would. We, in Canada, want harmony, and to achieve harmony in our country we have to be able to understand each other.
When I was little my mother — and some of you have heard me say this many times — used to ask me to play the piano. To annoy her, sometimes I played only the black keys, and sometimes I played only the white keys. Try it, senators. There is no harmony if you play only black keys or play only white keys.
To have real harmony in Canada, to really serve all Canadians — and we, as legislators, must look at the needs of all Canadians, not only a portion of them — we have to make sure we have data for all Canadians. We cannot today say that we didn’t have time to collect data for a quarter of the population. Honourable senators, I know you will all agree with me that that is not acceptable. Thank you very much.