Physician-Assisted Dying Committee on Feb. 1st, 2016

[Prof. Carrie Bourassa]

In the Anishinabe culture, which I'm familiar with as a Anishinabe Métis, we go through rites of passage. For my daughter, when she had her first moon time, she was age 12. At around age 12 or 13, when they are going through their rites of passage, that's when you say they are starting to make their mature decisions.

Now, they're still youths. They still need the love and support of their parents and their community and their kokums and mushums, their grandmothers and grandfathers. But that's when they're starting to go into, as we say, the rapids of life. Those are their tough years, their teenage years. That's when they have to start making their decisions and learning from their mistakes. You give them in their younger years what you hope will be their values. We call them the seven sacred stones. You hope that they will make those decisions. It is up to us now to stand on the riverbank and yell words of encouragement. We don't get in the river with them but just let them make their way. That's really when they start to mature and learn. You have to let them make their mistakes, if that makes sense.

So it's usually around those rites of passage.

[Julie Dabrusin, Liberal, Toronto—Danforth, ON]

Is there a point in time when that starts applying to health care decisions? You've been talking about 26 years of age, and 23, and also first moon time around 12.

[Prof. Carrie Bourassa]

Yes, it would be around then, because you have to start taking care of your body. As a young woman, now it's your first menstruation, and now you have to start taking care of your body. Now you have to start making those decisions about your body. As a sacred young woman, or as a young man, you have to start making those decisions. Now you're of child-bearing age. That's when you have to start making those decisions around your body, your health.

It varies, obviously, from community to community and nation to nation, but those are the teachings that I was given. It doesn't mean that I'm completely void as a mother, that I don't have input, but you want your children to start making those decisions now. They're maturing, and they have to start to listen to themselves and make those decisions as a young woman or a young man.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Mr. Cooper.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you, Mr. Chair. I'll be sharing my time with my colleague Ms. Harder.

Professor Bourassa, in your presentation you referred to the need for provision of “culturally appropriate” and “culturally safe” services. That's how you characterized it. I'm wondering if you might be able to elaborate on exactly what that means in the context of euthanasia and assisted suicide.

[Prof. Carrie Bourassa]

I think it's going to depend on communities, to be honest with you, but I think the first thing would be for physicians and clinicians to really understand about power and the systemic issues. We have a lot of systemic issues that I think people don't want to acknowledge. Really, cultural safety is about acknowledging power systems and understanding the ongoing impacts of colonization. Knowing that and understanding it means that then you learn about how to engage with communities.

Then, when you can engage with communities, that's when you can open up those lines of communication in order to understand what the needs of the community will be around physician-assisted death. If you can't do that, it's not going to be a success. You're not going to know what those needs are. The needs are going to be very different. It's not going to be much different from end-of-life and palliative care issues. In fact, I think it will be more sensitive.

If physicians are trained around understanding those root-cause issues, those deep-seated systemic issues, they're going to be able to open up those lines of communication. The number one problem we've had—and nurses have said this to us—is that they don't know how to start discussions. They're worried about offending the people they're working with. They don't know enough about them. They don't understand the spiritual needs and aspects. They don't know why they have to smudge. There are all these kinds of things.

If they can understand those things going in, that is going to make those lines of communication open. It's going to create that environment of safety for the first nations people, Métis people, or Inuit people they're working with, and it's going to make their jobs a heck of a lot easier.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Ms. Harder.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you, Chair.

Thank you very much for coming out today and being with us.

My question for you, Mr. Miller, is about how as an organization you've clearly taken a very strong stance with regard to palliative care. You've been great advocates on that front. I'm wondering if you can explain to me the impact that a lack of palliative care might have on a patient's decision to opt for physician-assisted suicide.

[Gabriel Miller]

Why don't I speak first about the impact of a lack of palliative care on any patient? Then we can talk a bit more about how it might affect someone facing that issue.

Palliative care is care that's designed to protect the quality of life of the patient and their family. It's easy to forget, I think, how much our system is built around delivering services in hospitals that are typically about fighting a particular disease or treating a particular ailment.

That system, left to its own devices, can leave people in a place where their pain is not effectively managed; where their symptoms, from dehydration to nausea to dementia, can become a greater and greater drag on their quality of life and their ability to think clearly; and where their despair, their anxiety, and their fear in confronting their own mortality or confronting the pain of dealing with severe illness can have a profound effect on their outlook. Also, of course, there's the factor of whether they're able to receive care surrounded by loved ones and be in a community setting, versus sometimes being in an emergency room or in an intensive care unit, where they can be really removed from the people they need around them.

I think it's intuitive for all of us to see how much those factors can affect someone's well-being and their mindset. Also, there's evidence that it actually affects their medical outcomes. The people who receive effective palliative care, especially early palliative care, do better. I think we can all understand how having a positive and healthy outlook, and not dealing with depression and anxiety, can make it easier to combat a physical challenge.

I don't have research or expertise in terms of the connection between that and assisted dying, but I think of what was said in the consultation piece that was done by the panel. In fact, these are quotes from Dying with Dignity, “Nobody should have to choose an assisted death because the medical system has failed to give them other options”, and, “Canadians do not want assisted death to become the preferred option simply because other options, such as high-quality palliative care, are not accessible.”

I think we need to see that one of the unifying principles in all of this is that we would like as much as possible to help people overcome their suffering and meet their challenges through care and support. If anyone chooses death because those things aren't available, that would be a tragedy.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you.

Senator Nancy Ruth.

[Nancy Ruth, Senator, Ontario (Cluny), C]

Thank you, Chair.

I would like to know, what is “palliative care”? The reason I'm asking is that I heard recently of a friend whose husband had colon cancer and was in palliative care. He was effectively starved and not given fluids. His muscles contracted, and it seemed that he was in more pain. It was an extraordinary story. The whole family suffered—the child, the wife, and so on.

Could you tell me what it is you mean by palliative care?

[Gabriel Miller]

Sure. The professor may have more to add, or corrections to make, to my response.

We take a broader view of palliative care in that we really believe it needs to begin as soon as someone is diagnosed with a critical illness. Palliative care is the care that's focused on and preoccupied with the patient's quality of life, and quality-of-life issues emerge the moment someone is diagnosed with a critical illness. From that moment, they have to start dealing with a great deal of uncertainty. They need to be engaged in planning their treatment. There may well be symptoms to manage as a result of early treatment. Of course, these issues become more pressing the closer you come to end of life, because the time that you have is sacred and those challenges are pressing in on you.

More specifically, palliative care is delivered by a team. It is not delivered by a single specialist. That team could include a palliative care specialist. It potentially could include a family physician, a psychologist, a nurse, a support care worker. All of these people need to be working from the same playbook in terms of the choices the patient has made in terms of their care planning.

The team really focuses on three things. The first is pain and symptom management, which gets very complex, as people know, with a variety of medications and treatments going on. The second is psychological and emotional support. We all know, with the mental health awareness week that's just happened, what an interaction there is between mental and physical health. The final piece that we like to emphasize is engagement of the patient in key decisions, including the location of care. That means patients having the option to receive care in the community or at home when that's medically feasible, which is also usually more affordable for the system.

[Nancy Ruth]

Were you surprised by the story I just told you, that this happened to this particular man in palliative care?

[Gabriel Miller]

Yes.

[Nancy Ruth]

All right.

You've given all these criteria. When my own mother was 90 and was told it wasn't worth pumping out her lungs and doing heart work, she was given three choices on how to die. She chose one and that was it. She was put on a morphine drip and out she went. There was no food and there was no water.

Is that unusual, in your experience?

[Gabriel Miller]

Senator, I really need to be careful, because I'm not a physician.

[Nancy Ruth]

Okay. Thank you.

[Gabriel Miller]

Thank you.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Senator Cowan.

[James S. Cowan, Senator, Nova Scotia, Lib.]

At the risk of appearing to be sort of ganging up, I wanted to follow up on some points that Senator Joyal made earlier. All of us are aware of the statistics on the availability of palliative care and the need for better palliative care more widely distributed across the country, but that's not the issue we are here to deal with. You have asked to come tonight to help us deal with a very specific issue, which is how we should advise the government to respond to a decision of the Supreme Court of Canada.

This has to do with assisted dying, not with the availability of other things. None of us see physician-assisted dying to be an alternative to palliative care. None of us see that.

However, if we look at the international experience with physician-assisted dying, I don't have the numbers in front of me, but it seems to me that in every country where they track the numbers and the reports over the years, patients suffering from various kinds of cancers are the highest users of this option. If that's the case, it really surprises me that the Canadian Cancer Society, which has done so much good work in this area, is not prepared to come and give us some assistance in the task that we have before us.

I think particularly of advance consent and directives. I know from my experience as a lawyer the number of advance directives that I've drafted for clients who have cancer and who are concerned about the prognosis.

The Canadian Cancer Society must have thought about this. Is there no advice you can give us on the specific issues that are before us today? All of us would, I'm sure, support greater availability of palliative care, but that's not doable. We have to report to the government by the end of this month on some very specific issues. I was hoping you might be prepared to provide us with some assistance on those issues tonight.

[Gabriel Miller]

I appreciate what you're saying, and I think that as this issue moves on, there's no question that there's probably some more thinking that we have to do and we'll have to be part of some of those decisions. Certainly we recognize that the country's moving forward in this area and that there's a discussion to be had.

To be honest, I think, having reviewed the consultations that have been had, there's some very good feedback being provided to the committee.

I can appreciate your frustration with our not engaging on that question. I would only say—and I hope you'll take this in the spirit in which it's provided and I don't mean in any way to insult you—that I think the greatest risk in this situation is that the country will go through this situation and say, “Oh yes, of course everyone can agree with palliative care but we really need to take care of this assisted-dying piece.”

I go back to what's listed here in reports from 1995, 2000, and 2010. Mr. Albrecht—

[James S. Cowan]

Excuse me. I don't mean to cut you short, but I'm going to get short here in a minute.

Isn't it exactly that? This committee has been charged with a responsibility. The government has said that it will act in response to a specific time frame that's been set forth by the Supreme Court of Canada. Even if we wanted to say all right, let's set this issue aside and solve the palliative-care issue and then we'll get back to this, we don't have that luxury.

[Gabriel Miller]

Senator, if I, in any way, have left that impression, I want to correct it. We completely understand that direction has been provided by the court, that there's work to do on assisted dying, and that a response has to be provided on that. Frankly, we accept that this is now a right that's going to be recognized in Canada and that there are questions about how it's going to be exercised. This is not a question of “wait until”.

My concern, frankly, is that we will deal only with assisted dying. I think what we would say is that we should deal with assisted dying—and I'm happy to go back to our society and say that these people need some more feedback from us—but it will be a failure and a most dangerous failure if we don't also fix palliative care at this moment.

[James S. Cowan]

I would agree with you absolutely. Thank you.